Great News! PMDD Tied to Sex-Hormone Reactive Genes

Today's guest post welcomes author Eryn Speers' unvarnished reaction to the news that National Institutes of Health (NIH) researchers have discovered molecular mechanisms that may underlie a woman’s susceptibility to disabling irritability, sadness, and anxiety in the days leading up to her menstrual period.  I couldn't have said it better myself, which is why I asked permission to reprint Eryn's original Facebook post here.  

The bottom line is this NIH discovery is good news for us all.  Please be sure to watch the five minute video (link provided) at the end.

I have been through the gambit, had my moments of doubt, and a few good months where I thought I was "free" of PMDD. Chalking it up to stress, or difficult times, only to have it return with a vengeance. In my frustration I began my research again, shaking my head every time I ended up down the same road: eat clean, eliminate sugar and caffeine, get your hormone levels checked, get acupuncture, see a naturopath, try anti-depressants and Cognitive Behavior Theory. The list goes on and on, as we know. What I, myself, have come to realize, is that all this conflicting information just makes it all worse. That's why I am taking this new research as a cue to stop blaming myself, and to stop listening to all the noise and babble about what the "correct" treatment of PMDD is. While it's a good idea for anyone to reduce sugar intake, exercise regularly, and investigate possible food sensitivities - these things will make anyone feel better in general, but to continue to go in circles just adds stress to what is already a stressful situation.

I hope this new research helps others to do the same. Yes, it means we still suffer until they find a way to use the info to come up with a therapy that targets the actual cause of the problem, as opposed to the symptoms. However, at least those of us who are desperate and tired of trying everything to no avail, can try to find some hope in knowing that they are really working on it.

This is a disorder on a cellular level, and I am ready to accept whatever treatments they come up with in order to get my life back. My hope is that those of you who are very anti-pharma will try to trust, for a while, and give yourself a break from feeling that the only one who can correct the problem is you.

This puts so much undo pressure on us, and also nurtures an environment of pessimism and fear. We deserve to feel better! This problem is not caused by us. This is not a matter of poor diet or lifestyle choices, or a hormonal imbalance. All we can do right now is cope as best we can, and we're all doing that.

We're here to support one another, and I feel that we should all encourage one another to stay open to the possibilities as the research advances. Please, I implore you to keep trying new therapies until you are finally free of this awful disease. If you want to take anti-depressants in the meantime because they help, great! If you want to take birth control, or stay 100% natural in your efforts to get through and lessen the severity of your symptoms - also great!

However, please don't let the way this disease makes you feel hopeless and useless allow others to tell you exactly how to approach your own health. Don't let the fear and skepticism of others stop you from trying a drug that has been specifically developed to treat this issue in the future. They ARE working on it.

Please watch the video, and find hope.

Have faith! ~ES

PMDD and the MTHFR Gene

Today's gift is a post by PMDD Advocate Danielle Lasher Bosley, which helps to explain the mysterious MTHFR gene we have often read about.  

What is MTHFR? It's an enzyme that can be mutated. Women with PMDD don't all have the mutation, but it is assumed the vast majority of us do. If I had to personally estimate based on women I know who have been tested already, I would say above 90%.

MTHFR is highly linked to mood disorders, autoimmune issues, and many, MANY other things. Heart disease, PCOS, cancer, thyroid issues, addiction, miscarriage, fibromyalgia, IBS, bipolar, chronic fatigue syndrome, asthma, MS, cervical dysplasia and much, much more...

People with the MTHFR mutation cannot properly methylate. When methylation is impaired, they can't detox properly, among other things. Birth control, any synthetic hormones, prescription drugs overall are riskier for us. They essentially get us further away from being better while making us feel better temporarily. 

People with MTHFR should NEVER use acetaminophen (stick with bioron or ibuprofen if needed). We also should not be vaccinated. Many of us in the PMDD community who have researched this illness for many years and have also researched vaccines are confident there are potential links and that for some of us, vaccines contributed to or outright caused the start of this illness.

The two most common forms of MTHFR we know of are c677t and a1298c. Heterozygous MTHFR means you have one copy of one of these. That is the least serious form, but it still predisposes the individual to more risks than someone without MTHFR. Compound heterozygous means you have one copy of each form. This is more severe than the first form I mentioned. The most serious form of MTHFR is homozygous. Homozygous c677t is the worst one. This means you have two copies of the 677 form. Methylation is decreased to an estimated rate of just 30% of what the body should be doing in these cases. 

People affected by the MTHFR mutation need methyl folate. They also need to avoid folic acid. Folic acid is the synthetic form of folate (Liana adds: and is promoted heavily by the media to all women of childbearing age.) With MTHFR mutations, only methyl folate can be received and processed by the body. Synthetic folic acid actually builds up on receptors and blocks natural methyl folate from getting through. This makes us sicker.

Keep in mind this goes beyond vitamins. Folic acid is added to a TON of processed foods. Breads, cakes, potato chips, etc... This is part of the reason we improve when we cut out these foods. You might have heard women speak about their PMDD improving when they go Paleo, etc.... It's not merely because they cut out processed food. It's because in that step, they removed the folic acid from their diet and started consuming methyl folate. Their body is finally able to start working properly and detoxing well.

Vitamin B is also important and majorly impacts our moods. We must avoid cyanocobalamin and only use methylcobalamin. (Liana adds: Read the label on your bottle.)

Synthetic hormones and birth control are not only a risk for us because we have higher risks of heart issues, stroke, and pulmonary embolism, but because the synthetic hormones reduce folate! The hormone part makes you feel better today, but the damage its doing underneath the surface will make this illness, as a whole, harder to treat.

We are also at high risk of vaccine injury. Many of us are confident PMDD may be the result of vaccine injury itself. If you've never researched vaccines, they do indeed cause injuries. Many of them are brain injuries and issues that have led to the development of neurological disorders. As of this date, $3 billion has been paid out to victims of vaccine injuries through the federal vaccine court. The numbers continue to grow.

Vaccines are dangerous for us because they contain adjuvants we can't properly detox from when we have either the MTHFR and/or COMT* gene. MTHFR also inhibits our bodies from removing the toxins that vaccines inject. Just some vaccine ingredients include:

Formaldehyde, aluminum, mercury, aborted fetal cells, cow and monkey DNA, glycophosphate, polysorbate 80 (carcinogenic preservative), neurotoxins like ammonium sulfate, antibiotics (more harm to our guts), phenoxyethanol (antifreeze), and more.

Hope you're all hanging in. We ARE going to resolve this illness. ~Danielle

*Catechol-O-methyltransferase (COMT) is one of several enzymes that degrade catecholamines (such as dopamine, epinephrine, and norepinephrine), catecholestrogens, and various drugs and substances having a catechol structure. In humans, catechol-O-methyltransferase protein is encoded by the COMT gene.

Sharing the Sisterly Love - A Report From the 2nd Annual National Association for PMDD Conference in Philadelphia

The 2nd annual National Association forPre-Menstrual Dysphoric Disorder (NAPMDD) conference was like no other, ever, anywhere. Since continuing medical education credits were offered this year, they had a wide array of medical professionals present, both at the podium and among the attendees—all of them discussing Premenstrual Dysphoric Disorder, a disorder that affects women around the world with life-altering symptoms that revolve around their menstrual cycles.  Clinicians from all fields of PMDD treatment shared what they knew, what they believed, what they had discovered, what could be proven, and what worked for their patients.

For a research geek like me, it was sheer heaven. Nowhere else on earth would I find one location with so many dimensions of medical care for PMDD represented—and openly exchanging ideas, some of them rather heatedly. But to witness a public forum of medical professionals discussing the disorder I have suffered from for over forty years was a dream come true.

My deepest gratitude and admiration goes out to NAPMDD Executive Director Amanda LaFleur and her tireless board of women determined and dedicated to doing all they can to promote awareness and open discussion of a disorder we have suffered from in silence, confusion and neglect for more than the 70 years since it was discovered. In Philadelphia, on the 51st floor of a building overlooking the beautiful City of Brotherly Love, psychologists, psychiatrists, social workers, endocrinologists, gynecologists, medical researchers, reproductive hormone specialists and other PMDD advocates gathered. Several speakers commented that they’d only seen PMDD from their specialty’s perspective until this conference, and they appreciated the opportunity to hear other points of view, as it brought up ideas they had never before considered, and made their PMDD picture more complete.

Surprisingly enough, one thing everyone in the room during a particularly dynamic discussion of treatment options agreed on—the name needs to be changed and the designation of ‘dysphoric’ dropped, to remove PMDD from the realm of mental illness. PMDD is a biological disorder, not a mental one, and needs to be treated as such, and not with the current cache of psychotropic drugs designed to alter the mind.

That was my major takeaway from the conference. No, you are not crazy. That alone made it worth the price of admission.

I also attended last year’s NAPMDD conference in Denver. I would say the major takeaway from that conference was: You are not alone. Between the two conferences, I now have something I didn’t have the first forty years of my life with PMDD: Hope—if not for a cure in my lifetime, then at least for a reliable answer as to what causes PMDD and the best way to treat it. Nearly everyone I heard speaking on the subject, with only one notable exception, said antidepressants and/or birth control were not the answer for treating PMDD, but merely band-aids used to mask the symptoms, which can (and do) rebound worse than ever when this faux treatment stops.

But take heart. Caring professionals are out there studying PMDD diligently. Others want to learn all they can about PMDD, to be able to treat their patients correctly and with compassion. This is progress like my generation merely dreamed of. I am truly energized with hope for the growing number of women still in their childbearing years, struggling with this debilitating disorder. Now, thanks to NAPMDD, there’s a chance you won’t have to suffer like so many women who have come before you, shuttling from doctor to doctor to doctor, being misdiagnosed and mistreated, being told “It’s all in your head” or having your concerns completely dismissed because the doctor had no clue what you were talking about. Not to mention being used as a human guinea pig for countless medications we now know don’t work for PMDD, because while they may aid in suppressing some symptoms, they do not address the root biological cause of what is happening to you.

The second part of the conference was all about support and social networking. Last year, I think we were all simply relieved to meet “other people like us.” This year, we had many return attendees. Instead of anxious, relieved and emotional women dominating the conference landscape like last year, this year we had a strong squad of empowered women who returned to speak about their successes (and failures) in managing their PMDD, and to provide support and resources to those attending for the first time. Many new attendees brought mothers, sisters, friends or partners for support, and it was beautiful to see. The atmosphere was just as warm and welcoming as last year, if not more so. The Gia Allemand Foundation Reception Friday night was open to the public, and provided a fantastic opportunity to meet and mingle with both attendees and speakers. 

At the reception I had a fangirl moment when a PMDD researcher I’ve admired for years sat at our table and I told her, “I have a special binder full of all of your studies.” In exchange, she told us how she got into PMDD research and how inspired she is by the increasing awareness of PMDD in the medical community. Other highlights of the weekend include a tour of Philadelphia on a double-decker bus with ten other conference participants, exchanging ideas over breakfast with fellow speakers and drinks and snacks at the Tap House with Executive Director Amanda and our wonderful videography team at BKN Creative. I returned home with friendships I know will last a lifetime.

So the conference is not just about exciting news and taking notes. It’s also about having fun with friends and creating a network of support and resources you can count on during the hard times.

If you missed the conference this year, join NAPMDD to stay in the know, which will provide you with access to the videotaped presentations of both the first and second national conferences, to discover this information for yourself. The cost is $36 and well worth the price of admission. There is also a free membership, but that does not provide access to the videotapes; you’d have to buy them separately.

Knowledge is power, and knowing all of your options can empower you to seek proper treatment for your PMDD, and to stand up for yourself when you meet a medical professional that refuses to believe or work with you to find the individual solution that works best for you. With the information from these videos, you have the tools you need to be your own best advocate.

For more information on NAPMDD and how to attend their next conference, go to NAPMDD.org.

Pre Menstrual Euphoric Disorder - Have You Experienced It?

A reader asks:  Something I've never understood is my own menstrual symptoms, which I've never seen discussed anywhere.  I get the complete opposite of you.  Instead of PMDD, I get Premenstrual Euphoric D.  For three or four days before bleeding starts, I get s surge of energy, both creative and physical, and my sex drive goes through the roof.  Later, when my period starts, I get quite severe backache and cramps.  This, I assume, is another type of PMS.

I have other atypical reactions, too.  If I get too aroused while standing, I fall over.  I can't be the only woman who experiences this, but I've never heard it described.  Seems to me that we need a lot more research in this area. PMS isn't just cultural.  It's physical, but I suspect it's far broader and more complex than people realize.

If you come across an explanation for my PMED, I'd be very grateful to find out.

Readers:  Can we help a sister out?  Please share any similar experiences (or any links to relevant material) you may have in the comments section, or write to me privately here.  Thank you!

The Voices of PMDD: Our Seven-Year Struggle With My Wife's PMDD

Recently on Facebook I came across a conversation where one couple who had experienced PMDD was reaching out to help another. The first woman had asked her husband to write a letter to the other woman, to help the second woman explain PMDD to her husband. She then posted his letter on Facebook. I knew right away this man's wisdom and clarity could help so many others...so I asked the couple if I might share the letter on my blog, and they graciously agreed.

Her name is Twilah, and she has a blog of her own, one having to do with navigating the American medical system. His name is Alec Johnson, and here is his letter:

I was asked to write this in an attempt to explain PMDD from my perspective as a husband who has experienced PMDD. I am also a Clinical Scientist with a quarter century experience in medicine and healthcare. I can tell you from my experience, PMDD is one of the most difficult disorders [to diagnose and cope with], for both the patient and her family.

I speak from seven years of experience living with my wife, who was Jekyll and Hyde. I only hope to provide some assurance to you that your feelings of frustration, anger, hurt, and disbelief are normal and understandable.

I also wish to convey from a clinical standpoint that your wife is not making anything up, nor is she able to control her disorder. Even if she had the greatest willpower of any human, she cannot will a hormonally-mediated disorder away.

My wife is a very intelligent, driven, and willful person whom I adore. That's why I married her! When we met she was a runner who ran 4-6 miles every day of the week. She was less than 10% body fat, and thus did not have periods. It is common for women with this low amount of body fat to stop menstruating. When we began dating we went out to dinner often, and shared more than a few bottles of wine. This slight change in her lifestyle over approximately 2 years caused her to gain a small amount of weight. Maybe 8-10 pounds on her 105-pound frame was enough to restart her hormones and periods. She began to change.

I noticed her becoming moody and anxious as well as not being very nice to me. I marked it off as stress from our upcoming wedding and honeymoon as well as normal work and life stress. Things were mostly fine and then one morning she called me from the emergency room saying she wanted to kill herself. This was all completely from left field. I had no idea what was going on.

My wife had been experiencing PMDD for a number of months at that point, and was doing okay at suppressing the symptoms. On this particular day she could no longer control the most powerful human chemical, hormones. Hormones are intensely powerful chemicals for both men and women. I would imagine you and I are at least similar in experiences as teen men. You most likely remember the intense desire for girls. Hormones, and particularly testosterone, were front and center in that. You and I could no more control that intense desire that my wife could control her desire to die due to progesterone and PMDD.

I will not bore you with many details, but she and I went through hell for 7 years before her PMDD was eventually properly diagnosed and treated.

PMDD primarily manifests as a mental disorder. It appears as if the woman is depressed, or anxious, or suicidal, or any number of mental disorders or combination of mental disorders. My wife was treated with every depression, anxiety, and mood compound known to man—with no positive effect. There were numerous bad side effects though. After 4 years it was obvious that it was directly linked to her hormonal cycle. For about 2 weeks of the month she was perfectly normal. Then every month without fail she would wake up as a person I didn't recognize.

She was suicidal, depressed, and most of all had the worst anxiety imaginable. We told every physician we could tell that her symptoms were hormonal and directly linked to her cycle. They gave her more mood drugs and ignored the hormonal aspect.

Finally quite by accident she saw a reproductive endocrinologist doctor. This physician not only recognized PMDD, she knew how to treat it appropriately. Some women can be treated successfully with birth control pills or psychiatric drugs. Some women can't take those because of side effects or other reasons. For some women there are only 2 cures for PMDD, either a COMPLETE hysterectomy, or menopause.

To prove that it was PMDD, the reproductive endocrinologist prescribed a drug named Lupron. This is a once a month or once every 3 months injection. My wife was to take the injection for 6 months. Lupron shuts off the ovaries and hence mimics menopause or hysterectomy. After a couple of weeks on Lupron my wife was back. It was completely obvious that what we had been telling many doctors for years was true. She had PMDD. No amount of willpower or mood drugs was going to fix or control my wife's complete [and biological] inability to tolerate progesterone.

Progesterone intolerance made her crazy and out of control, and controlled our lives for 7 years.

After 4 months the side effects of Lupron became debilitating, so the doctor referred my wife for a complete hysterectomy. That's when the real hell began. From the time between when the Lupron wore off and before the surgery could be arranged, my wife's ovaries rebounded. They produced massive amounts of hormone in an attempt to bring her absent hormone levels back into range. It was so bad I truly believed my wife would be arrested and put in jail before we could get her into surgery. I could tell you stories...

She finally had surgery on 24 December 2014. Literally the next day my wife looked at me and said, "I feel a calmness I've not felt in many years."

She was cured and our life together saved. This is our story.

I would imagine that right now you are experiencing the worst PMDD has to offer. Please understand that your wife can't will her PMDD away. She cannot "just try harder." She cannot simply "pull herself up" and "get it done" at times you might feel she should. I COMPLETELY understand. I'm sure I was not the nicest husband all the time when we were going through our hell. There were times I could barely maintain my sanity.

The only things that got me through was my love for my wife and knowing it was not her fault or choice. If I ever thought she could have chosen to act differently and she just chose not to, I would have left. Thankfully I knew it was not her fault.

From someone who has been in your shoes, I ask you to please understand your wife needs you more than ever. I know how completely maddening and frustrating it is to deal with right now. Get her to a reproductive endocrinologist who understands PMDD. Make peace with the fact that she may need birth control, psychiatric medication, or even a complete hysterectomy, and do what you can to get her the necessary treatment.

If surgery is appropriate do not allow a doctor to leave either of her ovaries. Ovaries are the problem.

As an aside, both my wife and I had our DNA sequenced for genealogy purposes last year. After that we found a website that would analyze our DNA and give us health information. It shows my wife has a known genetic mutation that makes her unable to metabolize her own progesterone.

I didn't need a DNA test to know that, but it was a nice confirmation of what we had experienced. 

PMDD - They Only See Our Failures

I’m one of the fortunate few. Through years of carefully cultivated self-awareness, I’ve finally learned how to separate myself from my PMDD. I know that I am not my PMDD. But millions more women are out there, valiantly struggling to get though each day, secretly convinced they are going mad, and simply hoping, even praying, that one day they will wake up and the nightmare that lives inside their minds will be over.

On the outside these women may seem to be coping—some of them even coping brilliantly by all external accounts--but on the inside they are terrified by--and of--this mystifying cycle of emotional imbalance that hardly anyone understands.

They’re also afraid to tell anyone, for fear that those people, too, will think they are crazy.

Or worse, they’ve tried to tell others—friends, family, medical professionals--and have been discounted, dismissed, or simply not believed. Or perhaps the symptoms of PMDD have crashed over their internal walls and manifested themselves, and those they spend the most time with and/or are closest to have already deemed them as somehow defective. She’s a moody one all right, sweetness and light one minute, a raving bitch the next. What gives? What’s wrong with her? How can anyone be so freaking out of control?

Everyone wants to be normal, and PMDD women are no exception. But PMDD doesn’t do normal. PMDD is a biological imbalance in your brain that manifests itself both physically and emotionally. It’s the emotional part people can’t deal with. Women the world over are no stranger to physical discomfort. We can be feeling like something the dog dragged in three days ago and still meet our commitments, care for our families, run households and offices and companies and governments, head up foundations, give speeches, present or accept awards, create beautiful works of art, love our partners, and still get dinner on the table in time.

Women are awesome. We are born with the gifts of joy, laughter, insight, intuition, sensitivity, kindness, compassion, creativity, cooperation, and multi-tasking (our biggest downfall, as we routinely take on too much.) We have more endurance than men. We have more tolerance for pain, be it physical, mental, spiritual, or emotional. We are passionate in our beliefs, and loyal to those we love—even when that loyalty is far from returned.

If a woman had a broken leg, and was temporarily hobbling around on crutches, most people would understand if she was a little tired or edgy or weepy during the course of her day. Most people would offer to help, open doors, fetch and carry things for her, run some errands, give her opportunities to rest and refresh herself. Most would give her some leeway to maneuver as she tries to navigate through her suddenly complicated day. At the very least, they would try to be tolerant if her frustration spilled over.

But when our brains are temporarily broken, as in the case of the PMDD phase of our menstrual cycles, there are no boldly visible cues, like a pair of crutches. Sure, the sparkle in our eyes may dim, our heads and hearts and joints may hurt, our handwriting may become stiff and awkward, our reflexes slow and clutzy, but only those intimately acquainted with us may be able to notice. We might not even notice these things ourselves, if we aren’t paying close attention to our bodies. Which most women don’t, we’re so used to putting our own needs aside and fulfilling the roles we play for others—mother, daughter, sister, partner, caretaker, breadwinner, coordinator, confidante.

So silently we slog through our PMDD days, knowing we feel fragile inside, but with no visible way to communicate that to the world—other than our emotions. All through our lives, we’ve been socialized to believe emotions are bad for everybody but actors and actresses. Real people need to suppress their emotions. Emotions get you in trouble. Emotions are counterproductive. Emotions are messy and scary. Don’t make a scene, don’t make a fuss, don’t get hysterical, and for God’s sake, don’t ever cry.

People can’t handle it when other people cry. Men especially can’t handle it when women cry.

Anger is the accepted emotional outlet for men, but there is no acceptable emotional outlet for women. Women are not supposed to get angry. If we get angry, there’s something wrong with us—we’re being countercultural. Little girls are sugar and spice and everything nice. Women who show anger are frowned upon, called all sorts of derogatory names, dismissed, discounted, deterred and destroyed, one way or another.

And so most women turn that anger inward, where it manifests as depression.

This is what happens to someone who passes for a *normal* woman, mind you. But remember, PMDD doesn’t do normal. PMDD lifts the veil on all those suppressed emotions, all those bitten lips and mounting frustrations life throws at us, turns off the biological mechanism that holds all that suppressed emotion back, and flips the switch to ON.

PMDD is your steam valve, honey, and like clockwork, once a month it lets loose.

If you’re especially unlucky, it happens twice a month, catching you on your ovulation cycle, as well.

And when that happens, we fail. We fail spectacularly. We rant, we rave, we cry and throw things. We break things, too. Dishes and doors, spirits and hearts and hopes and dreams. We say things we don’t mean, and hurt the people we love the most.

Why? Because they can’t see inside our heads to where the synapses are temporarily not working right, because they can’t see that we’re fragile inside on those days.

Because they can’t see we’re temporarily on crutches.

And for that, people call us crazy.

We’re not crazy. We’re pre-menstrual. More about what this means next week. In the meantime, remember, You Are Not Your PMDD. It might take up a huge chunk of your life, especially since you probably spend your non-PMDD days trying to make up to everyone for the way you *supposedly* let them down on your PMDD days--but really, who let who down?

Think about it. If you were on crutches, wouldn't the people in your life treat you with more care?

So you are not your PMDD, and your PMDD is not you. It’s something you have to deal with, like you would if you broke your leg, but it does not define you. No one who doesn’t have PMDD has a clue about how much energy and effort is expended in trying NOT to blow up, NOT to burst into tears, NOT to ruin the party, the family outing, the meeting, the conference, the trip…

The relationship.

All others see is our failures. But I read the Facebook posts, and I see how hard everyone tries, and my heart goes out to each and every one of you as you describe for the others how you feel it coming on, how you feel the tension building, how you are in the middle of the storm, how you hate all of it…

And how you ache inside as you do your best to deal with the heartbreaking aftermath.

I am here, and I understand. Because while I have a better handle than most on my PMDD, can even separate it out and still get my work done when my mind is acting up the most, I know all too well how much energy that takes, and how drained you can feel at the end of the day.

And even when I make it through 90% of the day without weeping or snapping or snarling at someone, even when I’ve spent the day protecting others from myself and my moods, moods I have as much control over as I would an allergic reaction, even when I’ve done everything I can to make sure I don’t ruin their day…

There’s always the chance the dam will break.

And that is all they see.

Do not let anyone define you by your failures. It’s not right, it’s not fair, and you wouldn’t do it to them.

Take care and God Bless.